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Normalising Dementia

A small piece of history was made this week. It involved the BBC’s flagship current affairs Today programme, its veteran presenter John Humphrys and the normalising of dementia.

Aired in the primetime 8.10am slot normally reserved for Prime Ministers and chief executives of beleaguered FTSE 100 companies, a report by Radio 4’s most famous Welshman did more to dispel the lingering stigma attached to this misunderstood condition than any celebrity-led campaign could ever do, no matter how big the star.

In the first of a two-parter on the subject Humphrys didn’t blind us with science, regale us with numbers of sufferers, or introduce us to experts to do that for him. Instead, having explained why the use of passive vocabulary such as “sufferers” reveals just the sort of unthinking attitude that helps to feed our fear of dementia, he introduced us to two people who know exactly what it’s like to have it because they do.

Linda and Grace – aided and abetted by their respective husbands and the man better known for his sharp interruptions than his empathy – showed that while being diagnosed with dementia is, in Linda’s words a “pissing, shitting, bastard of a thing” that makes her justifiably angry, they’re still them, still human, still normal.

Grace summed it up well. “I live day to day, week to week; I know I have dementia, I know that it’s likely to get worse. I just seem to be, in my husband’s eyes and in my eyes, normal”.

And that, as Humphrys said – and extraordinary as it seems midway through the second decade of the 21st century – is a breakthrough.

At the beginning of his interview with Linda, Humphrys seemed (unusually for him) to be lost for words. She was, he said, “so far removed from the lazy stereotype of a dementia victim that it’s hard to know where to begin – I suppose not treating her as a victim is a start”.

It is indeed, Mr Humphrys. And when done in front of 7million listeners, by you, it matters. A lot. The fact that Grace and Linda took pole position, relegating dementia experts such as Alistair Burns, clinical director for dementia, NHS England, into second place the following day (in an earlier, less prestigious slot) is also important.

I’ve been writing on dementia for long enough to know that many of those who have it dislike being perceived as victims almost as much as they dislike being left out of discussions about themselves.

In the absence of a cure many, like Linda and Grace, are intent on making the best of their lives, on raising awareness of what dementia really is – the umbrella term for scores of brain-altering incurable diseases, some of which affect younger people – and on eliminating stigma. This week, on prime-time radio, they came closer to achieving those aims.

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[…] the rest of us that they’re normal, things are finally beginning to change. Hence, as I said at the time, the tremendous importance of two people with dementia being interviewed by the veteran broadcaster […]